Confession

When you find out you have a GBM, it’s a terrifying and lonely experience. Some may seek other patients through support groups. Some find others through various online sources – Twitter, Facebook, etc. It’s important to find people who have an understanding of what you’re experiencing, to know you’re not alone. Caregivers need those contacts too, sometimes even more critically than the patient. Perhaps you get to the point where YOU can provide that support to others who find themselves with the same or similar diagnosis. It can be very inspirational and motivating. But it can also be very emotional.

Seeing your friends and/or loved ones decline or die – as many with GBMs do eventually – can become too much. Being reminded of what may be in store for you can become more than you can handle. Losing so many people to a disease you also have can send you into a serious downward emotional spiral. It eats away at hope and distracts you from the joys of everyday life. It’s your fate, be it tomorrow or 2 years or 10 years. Watching or hearing that someone is at the end of their journey can pack a wallop to your positive thinking.

And then there’s the guilt. You know that there are others out there that need your support and encouragement. You know that they may be suffering – emotionally and/or physically. You know they’re probably scared. You know they’re worried about their families. And yet, you’re afraid to get too close, become friends only to watch them suffer and potentially lose their battle. At least I am. Sometimes it’s easier to just stay in my little bubble of fear, self pity, and self imposed ‘ignorance’. I’m not strong enough to bear the burden, to watch them succumb to this disease. I’m selfish and uncaring, I’ve abandoned others, I’m emotionally weak. At least those are the thoughts that flow through my mind. It’s hard to admit this publicly, but I’m pretty sure I’m not the only one.

It’s okay for us to admit our weaknesses and fears throughout this process. It’s a whirlwind of emotions and there are good days and bad days. Other patients may have the strength to experience loss after loss and that ability is like a super power. I wish I had that strength, but knowing I could be the one suffering as I die at any point is too much for me to handle. If someone asks for my support or advice, I’ll be right there to offer it. But then I’ll likely retreat back into my hobbit hole of ‘ignorance’ until the next request. Honesty and guilt while compartmentalizing my experience between an open ended death sentence and managing my everyday life – just another part of having an aggressive malignant brain tumor.

2 Year Anniversary

Well, I did it. I beat the average survival statistic for a patient with a Glioblastoma Multiforme – the deadliest of all the brain tumors. I have brain cancer thanks to the mysterious golf ball size of aggressive malignant cells that grew in my brain. It’s been 2 years since that beast was removed by my brilliant neurosurgeon.

In those 2 years, I’ve gone through chemo and radiation treatments (which ironically has a risk of creating brain tumors) and began a clinical trial intended to train my body to fight the cancer. I’ve had 2 seizures (not counting the first) that have landed me in a hospital bed – the second one being life threatening. I spent months without driving privileges and still managed to get my kids to school and go to the grocery store thanks to my mom and my kind neighbors. My mom’s love and caring have provided my family with a consistent ‘normal’ life and have allowed me to focus on healing and fighting. I have grown even more fond of my neighbors and our spontaneous driveway parties and planned outdoor movie nights. I’ve napped, a lot. I went to New York with my husband. I’ve witnessed his courage, strength and love each and every day. I went to New York, London, and Paris with my family. I’ve read numerous books – most of them good. I met Diana Gabaldon and got her autograph. I lived through a kitchen remodel (not recommended while going through treatment.) I adopted a dog who is both sweet and crazy needy. I’ve watched my children continue to grow and thrive. My son’s guitar skills, love of soccer, creativity, ingenuity and love for some adventure amaze me every day. My daughter’s kindness, persistence at resolving social conflicts, strength in the face of adversity (like soccer ball kicks to her face), her natural skills in caring for young children, and her love of books and learning make my heart swell with pride. I have so many more things to be grateful for as I’ve attempted to live every day left in my life with joy and appreciation for the moments I’ve been blessed to experience in my uncertain future.

But the fight continues on. I’m fighting to still be here to celebrate my 4 year anniversary and my 6 year anniversary and so on…

Thank you all for the love, support, prayers and healing energy you’ve been sending my way over the last 2 years. They’ve gotten me to this point. I’d appreciate the continuing support to get to another anniversary.

As we continue the debate began by Brittany Maynard’s decision to move to a state that supports ‘die with dignity’ laws, let’s not forget the thousands of other people fighting this horrible disease and other types of brain tumors. We should also be discussing what can be done to develop new treatments and search for a cure so we don’t have to think or make decisions about how to relieve our own suffering in our last moments of life. Many of us with GBM’s have survived for extended periods of time, even if we received grim and specific prediction of the time we’ve got left. Fight on and see what miracles arrive and do your part to help others live longer in the future.

If you feel compelled to help focus on the brain tumor element of this story (not saying the national dialogue around ‘die with dignity’ is unworthy or less important), make a donation to the National Brain Tumor Association or any other organization of your choice that helps support research for treatments and cures, support for families and patients, and raise awareness of the other side of Brittany’s story.

 

Thank You!

It’s hard to be an advocate. But it can be done. We can imagine an advocate as someone who travels around the country representing an organization or group of people with a cause. We can imagine an advocate as someone who supports children/families in a court setting when they need a little extra support. We can imagine an advocate who volunteers their time for a cause they feel passionately about. But, you can be an advocate simply by being there, supporting someone you care about, learning more than the surface details and telling people about what an organization is there for, walking in an awareness driven 5K, or making a donation to a non-profit of your choice.

Advocacy comes in various forms and each of you can be an advocate with as little or as much time as you wish or have to spend.

With that in mind, I’d like to send out a heart-felt Thank You! to all of you who donated, sent messages of encouragement and support, re-posted messages, helped us raise donations, told friends about the National Brain Tumor Association, and took the time to walk with us this last Saturday in the second annual Silicon Valley 5k.

Team EveryDayLeft Right Left had at least 34 walkers (I’m sure I’m missing someone in my count) and 2 dogs with us. We had family and friends who traveled across the state, across the bay and flew in from out-of-state for a special visit. There are so many more who weren’t able to join us in the walk, but were there in spirit. The support and love we receive every day as we go through this journey always amazes me and I can’t express how grateful we are to have such caring friends and family around us. Your support warms our hearts and fills us with hope.

Our team was the top fundraiser (again) and your donations will go to help develop programs to support families, raise awareness, and contribute to research for new treatments and hopefully a cure.

When I walked (and talked) last year, I hoped I would be alive to attend again this year. Well, I’m still here and look forward to attending next year!

With all of our hearts, we thank you!

Team EveryDayLeft Right Left walking for hope.

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Friend With a Brain Tumor?

Do you have a friend with a brain tumor? Do you have friends who have friends with a brain tumor? Do you have a family member, perhaps a distant cousin with a brain tumor? How about some random acquaintance at work, does he/she have a brain tumor? Does a close family member have a brain tumor? Do you have a brain tumor?

Every body knows someone who has or had cancer of some kind in other parts of their bodies – there are really too many out there. But chances are you know someone who’s experienced living with a brain tumor – primary or secondary. You may have known someone who died from brain cancer. Maybe you just heard about someone who was diagnosed with a brain tumor, but you really don’t understand what that means.

When you start to look around and listen to the rumblings, you and everyone around you has been touched by brain tumors/cancer in some way.

The 120 different types of brain tumors are indiscriminate of age, sex, ethnicity, race. There are no known causes. There is no known cure. There are rarely severe symptoms to prompt CAT scans or MRIs to identify that there’s a brain tumor growing. The first symptoms for most are a seizure, motor control issues or speech difficulties. Not all tumors are cancerous, but they all impact us since they’re in the control center of our bodies. Some tumors start off benign and then grow into a malignant tumor that tries to devour your brain. Regardless, treatment options are very limited.

In the 18 months since my own diagnosis with a brain tumor/cancer, I’ve learned of far too many acquaintances or acquaintances of acquaintances that have also been diagnosed with a brain tumor or cancer. Is it that the numbers are increasing or is it like that car phenomenon – when you ‘never’ see a car until you have a conversation with someone about said car and then you see them EVERYWHERE.

Hopefully, it’s not an increase in cases. It is disconcerting though when all of these other cases start appearing before your eyes once your own life has been touched by brain tumors/cancer. Those people fighting with their brains have always been there, we just haven’t noticed. It’s enough to make you feel a level of guilt for not knowing, for not doing more to support them and their families. Now that you understand what a brain tumor or brain cancer is capable of doing to you and your family, you feel guilt for not supporting people you never knew existed before you became a member of this horrible, elite society.

As is often the case when someone you know is first diagnosed with cancer, you don’t know what to do to help. You may not know how to start a conversation. You’re afraid to ask. You make so, so many assumptions about what’s happening. Or perhaps you ignore it altogether because it terrifies you.  When you see them and they don’t look sick, maybe you’re relieved that they’re ‘cured’ and don’t need to address their experience.

Having gone through the bad days, the REALLY bad days, and have been lucky enough to have many good days, I’d offer a few tips (from my perspective) on how to interact with someone diagnosed with brain cancer:

1. We will designate a family member who understands what’s happening to provide updates to those people who need to know. This person will NOT be the patient, their primary caretaker (in my case, my husband) since they are already over their heads with shock, research, information overload and serious decision-making. They’re dealing with fear, terror, worry, anger and healing. Please do not try to ‘go around’ this designated family member. Respect our privacy as we process how are lives have changed dramatically and figure out what to do next.

2. If you want to help, offer to have the kids over for play dates (not therapy, PLAY), drop off food – this is NOT the time to try that new recipe by the way, help take care of the animals left at home, make sure the garden stays alive, drop off movies or magazines… Notice these are all things that do NOT involve short or long visits. Everyone is overwhelmed and exhausted – having to ‘entertain’ will just make that worse (and don’t say you don’t expect to be entertained – when someone comes into your home, you naturally feel like you need to be a good host.)

3. Try not to start every interaction with ‘How are you?’ Because, really, you know. We’ve just received devastating news and have likely gone through brain surgery and are facing months on chemo and radiation. How would YOU feel? I understand that it’s a natural question and its well-intentioned. But if it’s asked too many times, it begins to feel like you should just make a recording and hit PLAY each time it’s asked.

4. Help take care of my caretaker – he’s scared out of his mind too. He’s trying to be my advocate, make huge decisions, keep it together emotionally, take care of our children, and be my body-guard – trying to keep people away while we process what’s happening as a couple. Once things calm down a little, take him out for a beer, LISTEN to him, go for a hike to look at a beautiful view, remind him to take care of himself, ask him if he needs anything (or better yet, make some suggestions on how you can help), let him cry without judgement or attempts to placate and remind him to shower and brush his teeth.

5. Remember that just because I have cancer, I’m still me. I have not regressed in age – don’t treat me as if I’m all of a sudden a child again. Condescension or offering theories on why I may have gotten cancer or suggesting things I might want to do in terms of treatment doesn’t help. At all. Not one little bit. Respect my decisions about treatment, period and treat me like the adult I am.

6. My cancer is not about you. If I don’t want to talk to you or see you, don’t take it personally. If I ask you to leave after a short visit (which all visits should be), don’t take it personally. Don’t tell me how devastated you are about my cancer. Don’t ask me about my cancer every time you see me – take my cues and ask me about every day things and tell me about your every day things.

7. Read about brain tumors/cancer. Understand the difference between them. Educate yourself and don’t assume that it’s a death sentence. Don’t tell me about all of those who’ve lost their battles, give me hope with the positive stories. However, when I’m doing well, don’t assume I’m ‘cured’. There is no cure for brain cancer. Even if I have no sign of a tumor at the moment, it will likely come back at some point. Help me fight to make sure it’s a long, long time from now. Don’t tell me it’s all going to be ok, because it is NOT ok. It will never be ok. Don’t pity me or others in similar circumstances. No one did this to us. Understand that I’m fighting, we’re fighting every day of our lives. Know that we’re all hoping that one day there WILL be a cure. Know that we’re all fighting the odds to try to live as long as we possibly can. Pray, send positive energy, and hope along with us.

8. Don’t be afraid that I’ll have a seizure at any moment. I’m taking medicine to control/prevent my seizure disorder. But ask what you should do if I happen to have one.

9. Brain tumor/cancer patients need the support of family and friends. But no one can really know what they’re going through better than another brain tumor/cancer patient. Ask that person you know, or the person you know who knows someone if they’d be willing to talk to that newly diagnosed individual. 99.9% of the time, we’ll say yes. We know what its like. We can offer a willing and patient ear, without judgement. We can explain what they might expect. We can refer them to resources that will help them learn more. We can discuss clinical trials and what to ask the doctors/coordinators. We can share what our own experience has been on trials. But most importantly, we can reassure them that they’re not alone.

Support groups aren’t for everyone. General support groups often don’t provide the support that brain tumor/cancer patients need. Specific brain tumor/cancer support groups will likely be better. Either way, know that some people will find a support group helpful, some will not.

10. Understand how my brain tumor/cancer has changed me, understand that even if my tumor is on hiatus, I still have a brain injury thanks to the neurosurgeon cutting out a piece of my brain. The impacts might be obvious or invisible. For me, I have short-term memory loss, I will stammer, I will forget common words or references – or use the wrong words. Have patience and don’t complete my sentences for me. Don’t make me feel bad if I tell you something for the third time this week. On occasion, I have slight balance issues. I can’t take anti-histamines, so pollen is more evil than usual, requiring me to stay inside some days. Once a month, I will walk around with an ice pack on my leg. I have not lost my mind or received a strange, repetitive injury. I’ve received my vaccine injections and am extremely itchy and ice helps.

11. Donate to the cause to support research. We’ll be walking every year to raise money for National Brain Tumor Society. Help us raise money and awareness. Walk with us to show your support and possibly get a free t-shirt for joining Team Every Day Left.

Brain tumors aren’t as uncommon as you think if you listen to the rumblings.

 

 

 

 

My Mother’s Gifts For Life

I am very lucky to have parents who love and support me and my family, who have shown me that marriage can be hard but it’s worth the effort, that nothing is more important than family – blood or ‘adopted’. They’ve also supported me through bad decisions, good decisions, and the choices I’ve made about how to live my life – even if my views don’t always match theirs. I’ve written about what my Father has taught me and I think it’s time to talk about the valuable lessons I’ve learned from my Mom.

1. She taught me how to cook and enjoy both the process and eating the results. My mom taught many others how to cook, but my lessons were private.  One important lesson I got was that you should have at least 3 colors on the plate (ketchup doesn’t count). I still feel like I’ve done it wrong if I see nothing but beige on a dinner plate. She also taught me that sometimes pulling dinner out of the freezer is ok, baking isn’t for everyone, and cookbooks are for inspiration 90% of the time – use your imagination in the kitchen. Family recipes should be passed down and most can be modified to fit chosen dietary restrictions. This life skill has allowed me to make the change to being vegan without losing the joy of being creative in the kitchen.

2. Sit down as a family for meals. No one is too busy to NOT sit down for a good meal and connect with each other ever day – even if it’s a quick meal. As an aside, for bigger special occasion meals, get ‘fancy’ dish ware that can go in the dishwasher.

3. Create a garden – love, nurture and enjoy the bounty. Enjoy the process and take the time to prepare your soil – it’s the foundation for growing. (Yes, the implication was intentional)

4. Play with your children/grandchildren – even when you’d rather be napping, cleaning, or watching cat videos on the internet. They will feel valued and encouraged to continue their creativity. No matter how busy you think you are, there is always time to clean, do laundry, cook later. Love unconditionally now. Building Lego creations or tolerating crazy makeovers with children/grandchildren will always be more important than anything else on your list of to-dos. Let them wear a monkey costume out to dinner and be proud of them for doing it with aplomb.

5. Read as much as you can and escape into each book. Read what you enjoy and share books with friends. If a book isn’t catching your attention, leave it behind – there are too many good books to waste your time on any that you don’t connect with. Teach your children the magic of books, beginning with reading to them every day.

6. Give love and support to others – it may be the only kindness they have that day. Strangers need this kindness more than anyone. Don’t make assumptions about them or the choices that may have gotten them into a place of need. If they don’t accept your support, let them continue on the path they’ve chosen for themselves – sometimes people aren’t interested in what you can offer, even if it’s just a meal or a conversation. That’s ok, some people enjoy being the ‘victim’ of life or choose to live in a manner different from your own. Show them kindness and then let them go.

Your family may have needs at critical times in their lives. Do what you can to help take care of them. My mother saved me by taking care of my family, acting as my nurse when I went through chemo and radiation AND made the questionable decision to move forward with a kitchen remodel at the same time. You know your mother is a saint when she helps set up a temporary kitchen, continues to cook for your family, and washes any non-disposable dishes in a teeny bathroom sink.

7. Every child needs to learn how to cook some basic meals, clean, garden, do laundry (including ironing), and sew on a button before they leave home. Extra sewing, knitting, and gourmet meals are a bonus. These are critical life skills to have when living on your own. And every woman is impressed by a man who can sew and clean a toilet well.

8. You can show love to a child or grandchild when you create structure, establish rules, expectations, and consequences for bad choices. Love comes in teaching morals and responsibility, setting a good example, and understanding different points of view with respect and acceptance. Love comes in sharing time, showing generosity of spirit (rather than in physical things), and celebrating everyone’s unique self. Love comes in encouragement of success, displays of bravery and accomplishments big and small. This love creates confidence, a sense of security and an environment where your children/grandchildren feel safe telling you about their fears, problems, questions and discoveries.

9. People can grow when they’re exposed to new experiences, new ideas, and new points of view with an open mind. Living unwed with a dreadlocked reggae musician can sometimes work out well for all involved – you just may get a good story and a wonderful son-in-law. Traveling the world gives you a broader understanding of others’ experiences and culture than you’d ever get sitting on your couch and watching the travel channel. Sometimes your children need to learn by making their own decisions in life – support them, but let them learn through those choices and any consequences – don’t feel you need to ‘solve’ things. Good or bad, the lessons they learn will stick more than a lecture or having a solution handed to them based on YOUR opinions and life views. Allow them to grow and see the world through their own eyes.

10. Sometimes the ‘small’ things in life are the most important. Enjoy watching the birds at the feeders, the trees in bloom, the changing colors in fall, holding a baby, snuggling with a child, baking cookies – just because, or watching your children play harmoniously. Too many things can be overlooked in the hustle and bustle of life, sometimes you need to just stop and enjoy the journey.

Happy Birthday and thank you Mom for being the best role model a girl could ever have in life.

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The Days I Forget

As I was thinking about those long periods of between days I mentioned in my last post. The days between appointments (only 1x month for me at the moment.) It occurred to me that there are days where I forget. Not forget the day – though some moments leave my brain fairly soon after they occur – but forget that I’ve got brain cancer. I’m in this fortunate period of time, where I don’t have an active tumor, have few major symptoms, and have been seizure free for over 3 months. I don’t spend as much time writing about my life and experiences or visit Twitter as much – maybe because I’m unsure where I stand. Am I in remission? Is this just a slight break in the battle? Do I have the right to say I’ve got brain cancer? There are days when I forget about the fact that I AM in a constant fight against the beast. It doesn’t mean I’ve forgotten about the others fighting the beast as well.

When I remember, I have some feelings of guilt. Like I’m being selfish for focusing more on my family (which I know is ridiculous to feel guilty about.) But I do feel like I’ve neglected those others, I’ve neglected our connection, I’ve neglected any support I can offer and the support I receive. Through those connections I’ve gained strength in knowing I’m not alone, but I see so many stories of people who’ve lost the battle and those they’ve left behind. I try to avoid those stories because I’m afraid it will hinder my optimism and take away some of my hope that I’ll be around for my family for many years to come. I’m not under any disillusion about my condition, but my support system has gotten me this far by truly believing I will be legendary. I want to be a success story that will inspire others to fight and have hope. I want to survive. I WILL survive (sorry about the ear worm.)

So, there are days I forget. I feel healthy. I listen to the bickering of my children and worry that they’ll do it forever. I laugh at the thoughts and observations that come out of my son’s mouth – making me wonder what the wheels in his brain are doing. I find joy in seeing my daughter get excited about dancing or designing the latest fashions. I relish the moments when I can have conversations with my husband over the nuances of the latest movie we’ve seen. I walk the dog and marvel at his ability to jump 3 feet up a tree in an effort to catch a squirrel – he never catches one, but he never gives up trying.

But the next MRI will come along. I’ll get anxious, as we all do before an MRI. I’ll hope that it will be clear. I’ll think positively. All while I wait nervously for the other shoe to drop, but at the same time trying to convince myself that it won’t.

I’ll come back to Twitter and the connections I’ve made. I’ll never forget that you’re out there fighting too. But sometimes I just need to take a break from the fear and burden of having brain cancer. I’ll manage the conflict of feelings I have as I retreat from the community for just a little while, but I’ll be back. I’ll never forget that this is a group effort.

Everydayleft, Right, Left…

As we near the one year anniversary of my Brain Surprise, my family has decided to show their support and love by helping to raise funds for National Brain Tumor Society in our local Silicon Valley Brain Tumor Walk on October 26th. My husband and brother-in-law have started a team: EveryDayLeft, Right, Left…  Get it?

ABOUT NATIONAL BRAIN TUMOR SOCIETY

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow. This means effecting change in the system at all levels.

We have a rigorous and thoughtful agenda, integrating research and public policy to bridge critical gaps. Starting with discovery science, to clinical trial design and the development of new therapies, there are many opportunities to make improvements and speed the momentum of new findings.

National Brain Tumor Society is the largest brain tumor nonprofit organization in the country, hosting events, workshops, and scientific symposiums throughout the United States. Learn more at http://www.braintumor.org.

ABOUT BRAIN TUMORS
  • Each year over 210,000 people in the United States are diagnosed with a primary or metastatic brain tumor – that’s over 575 people every day.
  • Because brain tumors are located at the control center for thought, emotion, and movement, their effects on an individual’s physical and
    cognitive abilities can be devastating.
  • Among children under age 20, brain tumors are the most common form of solid tumor, and the second leading cause of cancer-related death, following leukemia.
  • Brain tumor research is underfunded. National Brain Tumor Society is the only organization that not only funds significant research, but also advocates for increased government funding.
  • No two brain tumors are alike. Prognosis, or expected outcome, is dependent on several factors including the type of tumor, location, response to treatment, an individual’s age, and overall health status.
  • There are more than 120 different types of brain tumors, making effective treatment very complicated.
If you’re local, consider joining us as we walk and raise awareness and desperately needed funding. If you’re not local, consider just spreading the word, helping us raise awareness and funding.   Just click here: EveryDayLeft Right Left 

Thank you for your support!

Karyn